Marci's Heart Valve Journal

Hello fellow heart valve patients. I had my valve replaced 12/2013. Everything went well. In August I started to get rashes on my legs. The Dermatologist first thought this was Stasis Dermatitis which is due to poor blood flow to the legs. Red Flags went up all around. I called the cardiologist and his nurse didn't think it was due to my heart and later when I did an office visit he didn't seem concerned. Dermatologist did a biopsy and its eczema/dermatitis. I was just wanted to know if any of you have had this problem?

Lenore Mitchell I'm only 3 months out, not having any unusual skin issues (other than too many wrinkles...). If you're on any meds, you might ask a pharmacist about possible ... Read more

Lenore Mitchell I'm only 3 months out, not having any unusual skin issues (other than too many wrinkles...). If you're on any meds, you might ask a pharmacist about possible reactions or do an internet search at reputable sites such as NIH/medline.

More prayers for our friend Victor

Journal posted on August 21, 2014

He is still in the hospital trying to determine why his small bowel did the intussusception. This is when part of the intestine slides into an adjacent part of the intestine. His heart is doing fine. They are doing lots of testing. Keep him in your thoughts please!!

I have been in contact with Victor and his wife. He came home Monday and was back in early Thursday morning with pericardial effusion. While there they discovered he had a small bowel obstruction and went in for emergency surgery. Thankfully, they only did laparoscopic surgery as the situation corrected itself between the time they did the CT scan and the surgery.

Please keep him in your thoughts and prayers as I know he would greatly appreciate it.

A couple of days after I got home I developed what appeared to be a pimple. I didn't pay much attention to it but then had a check up with my PCP. She suggested I put some antibiotic cream on it to see what it did. It didn't do anything. A couple days later I was at the office getting my INR checked and asked about it. She gave me a prescription for antibiotic pills. The bump went away and didn't think anymore about it. The last couple of days there is another bump very similar to the one I had before. It looks like the beginning of a MRSA infection except this is right next to my scar. Opted to go to the surgeon today to check it out. The Nurse practicioner wasn't concerned and thought it may be a stitch trying to come out. She did give me a prescription and said I could wait a few days if I wanted to see what happened. I opted to get if filled tonight. I am so afraid of a MRSA infection and then possible endocarditis. Decided to be proactive rather than reactive.

I just want to say how disappointed in a few of my friends and how they handled the surgery and recovery. I have a friend for 30 years who has always said she will be there for me no matter what. Well I guess her idea of being there for me was to post a long message on Facebook the day of my surgery saying what our friendship means to her. She did not come to the hospital, did not come by the house after I got home and did not even call. I didn't expect her to fix meals or do anything financial as I know she is struggling. Very disheartening. (pun intended).

Another friend I have known for 30 years also posted on FB to let her know if we need anything. I ran into her a few weeks after and she didn't even mention the surgery. We have had a falling out of late but you know what when it comes to major health scares like this I think it trumps all other issues you might have with someone.

My next door neighbor never came by, called or anything.

My husband says I need to let it go but I am having a hard time doing that. We have another couple that we do a lot of things with and they were there for us in so many ways as were my family and my husbands. I am very grateful for that.

Its true...... you find out who your friends are.

I am glad that I have never shared this journal with my friends and family so I can say whatever I need to say without feeling like I will hurt someones feelings. You all understand and for that I am grateful for this site.

Michael Poe Thank you for sharing this with us all. I do know how you feel on the subject of "who my friends are and aren't". I know it was hard for you to put down but bless you for it.

Debbie Mullin Pretty much the same situation here...I don't even have my husband, as we're in the process of a nasty divorce, which has dragged on for over 18 months. My ... Read more

Debbie Mullin Pretty much the same situation here...I don't even have my husband, as we're in the process of a nasty divorce, which has dragged on for over 18 months. My son lives in a nearby town, but works all the time, his wife is always busy with school and her kids, I have one sister that lives very close, but have only seen her a very few times since my surgery. She DID however, wait with my 76-year old mother (who was also my caregiver) during the surgery. That was a surprise. My other sister lives 4 hours away and didn't come. She has called me maybe once. I haven't even heard from my son or his wife in the past month or so....no calls, nothing. Friends keep saying to let them know if they can do anything, but that's it. No visits or calls. And I'm not one to ask for anything....I guess I'm TOO independent. My mother stayed with me for a week after I came home, and I've been on my own since then. My husband had the gall to ask if he could come and wait during surgery, after not seeing him at all since he walked out, abandoning me, house, and all the bills, then kicked me off his insurance Jan 1st. I told him no, but that he could come and visit while I was in the hospital - I wanted him to see me like that. Selfish of me, wasn't it? He left with tears in his eyes.

I have been hurt by the lack of support, (other than on FB), and have felt SO alone during this time. My mother lives about a mile from me and just calls to check on me now that I've been released to drive a little bit. I still can't do a lot of things in the house that need to be done, can't afford to pay someone to come and do it, and have nobody to ask (not that I would!)

It's hard...and this journey has made me stronger. I know that I can get by on my own...which is enforcing my "backbone" for the upcoming nastiness of finishing up this divorce. I'm going to have to be strong and stand up for myself and my needs. I know now that I can do it!

I am also grateful for a place to 'vent' and share these feelings. I hope and pray that nobody else has to go through this alone. If not for my Mama, I'd have been totally alone.

Bless you all! Thanks for letting me share :)

Question for all the veterans here.

Journal posted on January 18, 2014

When I yawn or take a big breath I can feel something at the top of my sternum move or make a sound like something is rubbing together. Does this sound familiar?

I think I am getting the after surgery blues or depression. My recovery has gone very well but I feel out of step with my husband and family. My husband works long hours so he comes home from work, eats, spends a few minutes with me and goes up stairs to bed. I try to sit on the bed to talk with him and usually one of the girls comes in as they want his attention too. It's also hard to sit on the bed and be comfortable as I am still sleeping in the recliner downstairs. When I try and talk with him I don't have much to add to the conversation due to my being at home by myself all day. Reminds me of when I would visit my Grandpa in the nursing home and he would talk about bodily functions since thats all his day would be. Since our main tv is on the main level of the house (and my recliner/bed) I try to find something to do upstairs to give the kids a chance to watch what they want to on TV. This leaves me in no man's land.

I know this is just rambling but I am struggling to fit back into my own family. Thanks for letting me vent a bit tonight.

I have my AVR and root replacement done on December 10th. The surgery went very well as the Dr did not have to do the circulatory arrest to repair the root. Somehow he fixed the aneurysm without having to do that. I was most worried about that as it can have neurological issues later on. I stayed in ICU for 48 hours or so? They had a hard time getting the breathing tube out as I hear I freaked a bit with it. All I know is I felt something blocking my airway and it felt like I was going to swallow it, but I couldn't tell them. Once I relaxed and let them do it, it was fine. I remember it coming out and it was odd and uncomfortable but only for a few seconds.

For some reason when I have anesthesia I get really hot, but my temperature is fine. I froze everyone out of my room and I still had cool rags on my head. Once they removed the chest tube, I felt a lot better. I had also only been in my step down room a short time with the recent removal of the neck tubes when I coughed. HARD.. and flew open the clot and bandages on that. Blood everywhere. Later that night as I was attempting to walk a bit, I got very dizzy at the exact time the people who watch the monitors noticed my HR was 40. That earned my a external pacemaker for a few days. One other event like that and it was fine from then on. Stayed an extra day to make sure my HR was fine.

At home I am doing fabulous! My family is taking great care of me. I walk around the house a bit every few hours and have done stairs on a limited basis. Went to my GP today. All is well. My INR is low at 1.9 so we are adjusting the meds a bit. Sweet foods taste funny to me.

Thats the story in a nutshell. Glad its over so I can get on with the rest of my life. My second chance is here now. Going to work to get a lot of weight off so I can enjoy my husband and girls now and future grandkids.

The count down is beginning to next Tuesday. I can start to feel a knot forming in my stomach that almost feels like its coming up my throat. Then I take a moment and take a breath and it goes back down.

My leave at work was finally approved. I have no idea what they were waiting on. Approve it and I come back, don't approve it and I move on. I am not too sure about this company and its slow moving decision making.

Saturday I am going to go pick out a new recliner for me to rest/sleep in for a while. Lots of christmas shopping to be done. I have realized I probably won't feel like doing much on Christmas eve/Day this year. I am okay with that as my gift is a fresh start on my way to health. Get ready world... here I come!

Surgery is 13 days away. I actually ask Siri on my phone everyday after work how many hours until December 10th? I know one day she is going to say "Half past a monkey's a$$" to me.

I am thankful for my supportive husband Rick. He is trying to keep me busy so I don't get too much time to think about all this. Its a good time to keep busy with the holidays so he doesn't have to look far for things to do. We plan on putting up our christmas tree on Saturday night. The original plan was to just do the tree rather than all the other stuff. We told the girls that was the plan and their chins fell to the floor. Since I can do this before surgery we have decided to go ahead and do more decorating. We want their lives to be as normal as possible and having full on decorations at Christmas is normal.

I still have not been given the leave time at work. I finally told them today that December 6th is my last day so either approve it or not. I won't be there after so it's really a no brainer.

Tomorrow I am going to my brother and sister in law's house. It will be low key since there are only about 12 of us compared to Rick's family of about 40.

I have started to make some preparations for my surgery. Next week I am seeing a lawyer to do a living will and a durable power of attorney. I have bought a few items to recover with at home. For some reason my girls (3 teenagers) wonder "why are you doing that" and it upsets me that they don't have it on their radar that this is happening. Then I realize that it may be a way of not dealing with it by not acknowledging it and it may be that they are teenagers and haven't made it out of the "me" stage they are in. Probably a bit of both.

I keep envisioning what it will be like to be on the bed and rolling into surgery. What will say to my husband, kids and parents? Will I be calm? Cry?

I know it won't happen but I have realized I am not scared to die. I am not ready yet and so I am scared to leave my family. My faith tells me I will be okay so I know who will take care of me. Its just sad to think of my family moving on without me.

Today I am 20 days away from my Aortic valve replacement and Aortic root repair. I always knew this day would come and in some ways the time flew by in a minute and other times it drug along. The last couple of months waiting seem to be going on forever. I have known I will need surgery since early September. My family and I decided early December would be a good time to do this. September to December is a really long time to have this on your mind. At first I was rather excited at the idea to get it done just to feel better and get it over with. I still am excited but also feel a greater appreciation for how big of a deal this is. My surgery will involve the circulatory arrest so they can repair the aorta. It kind of freaks me a bit to think I won't have brain waves or heart beat and will be clinically dead.

I am glad I found this website and have enjoyed reading some of you all's journals. Its also been rather scary too.

At any rate, I am 48, married to a wonderful man named Rick and three awesome daughters, Erin, Kate and Emma. Three teenage daughters is frightening enough so heart surgery will be a cake walk.
Thats about it for me.
Marci